“Life is amazing. And then it’s awful…”

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters   ♥  August 17, 2019

“Life is amazing. And then it’s awful. And then it’s amazing again. And in between the amazing and the awful, it’s ordinary and mundane and routine. Breathe in the amazing, hold on through the awful, and relax and exhale during the ordinary. That’s just living heartbreaking, soul-healing, amazing, awful, ordinary life. And it’s breathtakingly beautiful.”

This reminder about the amazingness of life from author L.R. Knost has always rung true for me.(1)  And so do these words of a local Kindergarten teacher who tells her kids: “You get what you get, and you don’t get upset!”

But we do get upset. Really upset. Especially when we observe that we’re getting not nearly enough “amazing” and way too much “awful”.  . As a heart patient with ongoing chronic symptoms of coronary microvascular disease, I’ve been feeling distressingly awful lately. Usually this awfulness accompanies some other non-cardiac issue that dares to raise its ugly head, as if I actually needed ONE MORE THING!

This week, it’s been a lower back spasm, which is physiotherapist-speak for an ice pick jammed into my sacroiliac joint.

And my “normal” cardiac symptoms, particularly chest pain and a truly crushing sort of flu-like fatigue, seem to be happening more frequently in order to keep the ice pick company. And by the way, nobody tells you before you’re discharged from the hospital about the fatigue. . .

I’m managing most days with gentle yoga stretches and meds, especially frequent doses of nitroglycerin for chest pain (“Nitro is your friend!”) – but some days, that feels like just barely managing.

Throw in that pesky ice pick – and I can barely move. Lately, I can barely even think about moving.

Yet not moving is not good for sacroiliac pain. So I’ve been re-reading my “Pain Self-Management“ notes I took from my Regional Pain Clinic classes, desperately trying to find the handy tip I might be missing that’s going to pull me out of “awful”.

I have physio and massage therapy appointments booked, and meanwhile I’ve been cancelling plans all week, day after day, as I weigh the likelihood of being able to cope with the effort of simply making conversation. See also: “Confessions of a non-compliant patient“

But then, right in the middle of a day filled with “awful”, I’ll experience something so “amazing” that I actually forget about the “awful” and just enjoy the “breathtakingly beautiful” bits. BlackPressExample:  consider the resident harbour seal my family and I watched after our weekly Tuesday picnic supper at the beach. She had climbed out of the ocean to slowly drag herself up a large rock protruding from the sea, very close to shore. (Harbour seals are incredibly graceful under water, but slow and awkward on land).

Then we watched her little baby pup, even slower than Mum, drag itself up the same rock to join her. The two met, wiggled around a bit to stabilize, and then we watched in absolute delight as Mum nursed her baby on that rock.

By now, lots of other people out for an after-dinner walk had joined us to watch this rare sight. Passing cars began to pull over, and more people joined our group to ask, “What’s happening?!”  For almost 20 minutes, it was completely thrilling to watch this Mum and babe together.

We’re used to seeing seals swimming in the ocean here in Victoria, but in the four+ decades I’ve lived on the west coast, I have never seen this happen.

And during those magical moments, I somehow forgot all about pain or fatigue or the ice pick or anything awful that had been happening that day.

But what happens to those symptoms? Where do they go? How can I be so incapacitated that I’m almost unable to lift myself out of my red chair all afternoon, and then two hours later so enthralled by Mother Nature that I can forget about feeling ill?

Living with any form of chronic illness can feel like facing these kinds of daily questions. 

Example:  One day this past week, I felt so ill during my morning walking group that I had to go straight to bed afterwards, but the next day, I awoke feeling well enough to keep a coffee date with an old friend – an experience that actually turned out to be “amazing!”  I felt like a completely different person! Or, more accurately, almost like my old self, before heart disease.

My friend and I sat out on the beautiful patio together and talked about our writing and our kids and life in general as we caught up. I recall becoming aware at one point of how special this morning with my old friend was turning out to be. Warm sunshine. Birds singing in the leafy trees overhead. The “amazing” lasted for a while, even after I got home, tired but happy –  but I then had to cancel a later outing when the “awful” hit by lunchtime.

I think that’s what L.R. Knost was talking about in her quote. We should treasure “amazing” simply because we all know that amazing doesn’t last.

But I now think we could also treasure the “ordinary and mundane and routine.” 

Another example: one of my retired neighbours told me this week that her goal for the summer was to take a picture of the most beautiful flowers she could find around our neighbourhood while out for her daily walk. Now, unlike most personal goals like “Exercise! Eat healthy! Do more of THIS! Do less of THAT!” , hers is a small goal that seems destined to turn “ordinary” into “amazing”!  Every. Day.

Maybe if I were more consciously mindful about how wonderful “ordinary” can sometimes feel, I might be more often able to elevate “ordinary” to “amazing”, and downgrade “awful” to simply “ordinary”.

And that seems like a “breathtakingly beautiful” idea.

♥

  1.  L.R. Knost, author of several books like Two Thousand Kisses a Day: Gentle Parenting Through the Ages and Stages

♥

NOTE FROM CAROLYN:   I wrote much more about the importance of self-care (and pain self-management) in my book, A Woman’s Guide to Living with Heart Disease . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).

Q: How do you elevate an “ordinary” moment to “amazing?” .

♥

See also:

25 tips to manage the crushing fatigue of heart disease

Brain freeze, heart disease and pain self-management (including tips on why distraction is such an effective tool in the pain self-management toolbox)

Why taking a shower is so exhausting after a heart attack

Exhaustion: the ‘leaky emotion’ of chronic illness

Still too tired to put away the Halloween costume

I need a nap!

Why “NO” is a complete sentence

When we don’t look as sick as we feel

Looking good for your doctor’s appointment: oui ou non?

“You look great!” – and other things you should never say to heart patients

Depressed? Who, me? Myths and facts about depression and heart disease

Published by Carolyn Thomas

31 thoughts on ““Life is amazing. And then it’s awful…””

  1. Carolyn, you blessed me and challenged me with this article. I am a diabetic, have had a stroke and for the past 3 weeks have been in debilitating pain from my back. I need a serious operation for my lower back but have delayed it because of the COVID situation. Your article, as well as being incredibly well written, was frank and challenging. Thank you for “poking me in the eye” such that I might see the world around me more clearly.

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  2. Hi Carolyn,

    I’m sorry you’ve been feeling so awful of late. That sucks and it IS awful. Sometimes it’s really hard to stop focusing on the awful long enough to appreciate the amazing right in front of us.

    Been dealing with this myself lately as I’ve had a few cancer-related issues resurface this summer. (Long story. I’m okay.)

    This is one reason why Mother Nature is such a powerful source of serenity, regeneration or whatever you want to call it for most of us. Mother Nature can make us forget a lot of awful things, if only for a few moments. And sometimes that short respite makes all the difference. That story about the seals is just beautiful. And your question about where does that awful go in those moments of amazing – now, that is deep, Carolyn. Maybe our brains can only hold and process so much at once. Then again…

    “Maybe if I were more consciously mindful about how wonderful ‘ordinary’ can sometimes feel, I might be more often able to elevate ‘ordinary’ to ‘amazing’, and downgrade ‘awful’ to simply ‘ordinary’.” That is deep too.

    Thank you for yet another thought-provoking post. BTW, love that quote you shared from the Kindergarten teacher too.

    May all of us experience lots of amazing and yes, lots of ordinary too. x

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    1. Thanks Nancy for such a nice note. I hope your own recent scares turn out to be ‘ordinary’ at worst.

      You know, I think that this IS pretty deep stuff. I was telling a friend today about some lessons I learned during my Pain Self-Management classes, after she asked me if watching the seals last week had “distracted your brain or just focused it on something else?”

      The answer is BOTH: what we learned in class was that apparently distractions work because our perception of a powerful stimulus (pain or other distressing symptom) can be suppressed by focused attention on a non-pain stimulus. This basically tricks the nervous system, but it depends on the quality of the distraction AND the quality of the pain.

      I guess in my case, those seals were so darned cute that we were all utterly mesmerized by what we were all watching.

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  3. I can so relate to this, Carolyn. Pacing a day of errand-running is crucial for me. Too many things and I know I won’t be able to make it through the day. Yesterday after work, I was so wiped out I went home and passed out for a couple of hours. I wasn’t even sure I’d make it home! Still not sure where that fatigue comes from, it’s not usually that bad, but I just felt lousy all day — possibly due to a new medication.

    This post made me think of a couple of quotes that have really spoken to me. The first is something I read more than 40 years ago and the concept has just stuck with me — this is my paraphrase:

    Life is made up of ordinary days — days when situations might be wonderful or might be terrible, days you embrace with joy and days you wish you could avoid altogether. But you need to be faithful to live each ordinary day as best you can, because how you live your ordinary days will determine whether or not you will have great, shining moments.

    Then there was this one from my daily planner last month:

    Sometimes you will never know the value of a moment until it becomes a memory.
    — Theodor “Dr. Seuss” Geisel

    Just some more food for thought, hope this blesses someone!

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    2. Hi Carolyn,

      We hope you’re having a better week with more amazing days 🙂 One of our favorite quotes, “the best things in life are free” – just like observing nature! Thank you for sharing this with us, we can imagine the mum and baby seal while reading your blog.

      Chat soon,
      Lace

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      1. So true about the “best things in life”, Lace. Sometimes we feel like “amazing” experiences have to be things like faraway expensive vacations, but any outing in nature, fresh air, blue skies, beautiful trees – hard to beat all that, and free…

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  5. I can’t remember my last “amazing” … I have moments of feeling full of love, fleeting reactions to the world’s wonders and thoughts of gratitude . . . but my highs are drowned by the lows.

    Unfortunately, the anticipation of being smacked down for days after participating in even pleasurable activity blunts the experience.
    It’s hard to acknowledge but it is what it is and after 23 years, it’s simply normal.

    My blessing is I can still find the humor in life… even my own life.

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    1. Hello Judy-Judith – what you describe (“highs drowned by lows”) is unfortunately common, especially your excellent point about having to anticipate the recuperation consequences well in advance of what saying “YES” might mean. There’s a price to pay either way: if you go, and also if you don’t go.

      I’m reminded of the wonderful writer Toni Bernhard (do you know her “How To Be Sick?” series of books? She describes her own severe chronic illness like this: she went on a vacation trip to Paris with her husband, during which she was so sick she had to go to bed for the entire holiday – and she never got better. That was 18 years ago. The former attorney and Law School Dean has been bedridden ever since. She once wrote about this ‘recovering from having fun’ topic one year when she was really feeling nostalgic for her family’s big annual holiday dinners with family and friends that she used to love but had to miss every year.

      But she knew from painful personal experience that if she stayed awake and chatty for the whole evening, she’d suffer horribly afterwards. So she made a conscious decision about WHICH PART of the event she could tolerate: the early part when guests were arriving (followed by a quick goodnight and back to bed)? Or staying in bed until the main course, and leaving back to bed immediately afterwards? Or staying in bed until dessert was served?

      She began planning very short appearances that she loved. But the point is that she knew without any hesitation that staying up for the whole event was no longer possible. As she says in her recent 18 Tips from 18 Years Sick article: “Accept that being spontaneous may no longer be in the cards for you!” It’s just way easier on the body to accept rather than fight it.

      Take good care… wrap yourself in that wonderful sense of humour of yours. It’s amazingly tough stuff! xoxo

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      1. I’ve not read Toni Bernard . . . I’ve not read any books on how to do “it”, what to do, why to do, where to do for over a decade. No matter how good the information, how inspiring the story, I’ve discovered I have to find my own way, in my own time otherwise I get into a negative space in my head thinking “everyone else” has the answer while I’m still searching for the right question.

        It’s hard to give myself permission to be “less than” I want to be or think I “should” be.

        I suffer from character dysmorphia disorder – I keep seeing myself with energy to spare, multi-tasking, successful, famous, brilliant and . . . about 25 pounds thinner. My day to day existence keeps knocking me on my butt and yelling “It ain’t so!”

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  6. Carolyn, you are amazing. You have given so many people inspiration, hope and permission to feel as they feel.

    I thought it was only me who could physically feel so terrible one day and think I am going to die, and then later in the day or the next day or two feel like my old self.

    Please don’t expend your energy writing back. Save it for more of the amazing!

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    1. Kathy, it’s certainly not only you! This ‘on again, off again’ variability of symptoms has also puzzled me since Day One.

      Immediately after my cardiac diagnosis, I felt so awful that every night I was convinced I would die in my sleep that night. The odd thing was, I didn’t feel afraid, I just felt “resigned” to this fate. So every night I tidied the apartment, took out the recycling, wiped everything down, made sure everything looked good for when the paramedics discovered my corpse the next day. Imagine – preparing for my own death day after day! This went on for months, I never said a word to anybody – and the apartment had never been so clean! But eventually, it hit me that, apparently, I had not yet died, and I could actually stop obsessing over that fate… Tonight MIGHT be my time, but I don’t have to focus on it so severely.

      Thanks so much for your kind comments.

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  7. Thanks for this, Carolyn.

    For me it’s been a tough year. Lots of deaths, feeling how my own shortness of breath, dizziness and fatigue get both deeper and longer. Every day I have to forget several items on what I still consider a perfectly reasonable list. But then, there are the moments of beauty, clarity, love and happiness. Precious indeed.

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  8. Dear Carolyn, I wish I had the words to express how much your words of inspiration mean to me.

    I also become so discouraged and especially today, you helped me so much. I was also sent home from the hospital with the doctor telling me it was ONLY STRESS with a prescription for pain pills to be filled the next day then sent home. Of course I did not call my family as I was so shamed. I called a taxi. This was December 2015.

    The next morning I had a friend come over to get my mail for me and they drove me to another hospital where of course I was in full cardiac arrest. To make a very long story short, I now have 40% of my heart left.

    The life experiences you share keep me sane as I have to find The New Me. Oh, I went back to work in retail of all things as I had been there 16 years. Just this past April, my doctor put me on disability. So four months and especially today your graceful sharing touched me deeply as I too have THE ICE PICK and have had to cancel many plans.

    Thank you, also as nitro is my new friend.

    I am sending you healing positive thoughts as I consider you my friend and Thank You so much for your words.

    Very Sincerely,
    Frankie

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    1. Thanks very much, and my sympathies to you on your ICE PICK problem. It’s brutal!

      I’m thinking about your story of feeling so ashamed to tell your own family about being misdiagnosed with stress that you took a taxi home – the day before you suffered a freakin’ CARDIAC ARREST! Sometimes we can be so hard on ourselves – even when we’re not the ones who should ever feel bad about ‘making a fuss’.

      Sending those healing wishes right back to you, Frankie!

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  9. Thank you so much for this wonderful post! I often think I’m the only one who feels this way!

    Will remember this post when I hit one of those awful moments today… but mostly I will strive to see the “amazing” in the ordinary moments.

    Love your posts!

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    1. Thank you Jacqueline – you are definitely not the only one who feels this way! I suspect that it’s likely more effective when we practice seeing the “amazing” in ordinary moments compared to trying to downgrade one of those “awful” moments.

      Sometimes there is just no way to get around the fact that, at the time, they ARE awful. Maybe trying to stay a bit more conscious however can make it easier to spend less time in “awful”. Good luck to you…

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    1. So glad you mentioned the power of music, Lynne. I recently heard a radio interview about why music can have the power to affect us not only emotionally but even physically (e.g. can cause goosebumps, or even weeping!) Two of the classic examples they mentioned: Pavarotti’s high B in his “Vincerò! Vincerò!” line of Nessun Dorma, and Bobby Hatfield’s “I need your love” line at the end of the Righteous Brothers’ 1965 hit Unchained Melody.
      P.S. I grew up in a Ukrainian family (and married an accordion player!), so polka music can still make me sing along, feel happy, and (of course) dance!

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  11. Thank you for a wonderful post. I feel like this sometimes and then I see or read about someone else whose life has really taken a hit. My Atrial Fibrillation for the last 8 years has been managed pretty well except for a cardio version I had 3 days before Christmas last year. Now that was my awful but I know it could have been worse.

    I have a friend who has A fib and his life has been hell with it. So I try to keep a positive attitude because if I start to feel sorry for myself, it can spiral and I know that isn’t good for my health.

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    1. Hi Michelle – first, thanks so much for taking the time to share your perspective here. It’s so distressing to hear of your friend’s experience with AFib, which truly does sound “AWFUL!” And it’s so true: there is always somebody out there who is doing much worse at any given moment, and things could indeed always be much worse, but I’d like to suggest that we patients are the only ones allowed to say things like that, and only about ourselves, as you have done here.

      I like to mention this because I’ve heard other people jump in with statements like, “You think YOU have pain, let me tell you about a FAR WORSE EXAMPLE THAN YOURS!“ – which is so dismissive and unhelpful that I wish people would just stop doing it!

      I agree 100% with you re self-pity, a way to keep doing what behavioural scientists call “ruminating” (like picking a scab that can never heal because we keep picking at it…)

      I really hope that your cardioversion last Christmas turns out to be the worst of your “awful” and a turning point for your future prognosis.

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  12. I’ve had microvascular disease for nearly a decade. The best help I’ve had in coping with it has been/is/will always be Carolyn.

    She is the only person (including my very savvy cardiologist and a very concerned PCP) who accurately describes what this disease does — how it works — what it is and isn’t — and how to deal with MVD’s whims and vagaries.

    Thank you, Carolyn!

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    1. Hello Sandra and thanks so much for your very kind comment, which means so much to me as a sister MVD patient. “Whims and vagaries” is a perfect way to describe our shared diagnosis, isn’t it? Just when I feel like I have this thing figured out – BOOM! – it changes completely!

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  13. Dear Carolyn,
    As a Spiritual teacher and counselor what you are describing, seeing the beauty in all things, is one of the keys to living deeply.

    We live in a fast paced world with multiple “stimuli”, “places to go “, and “things to do”. We get glamoured that being busy and accomplishing things is extremely important and that not doing them makes us a lesser person.

    This is not true. When silent reflection and becoming one with a flower, a seal or a piece of music, becomes more valued than being busy, the world will become a much more serene and “amazing” place.

    I do believe that when we become too glamoured by our busy-ness and are constantly looking outward instead of inward…..Divinity will literally stop us in our tracks to break the cycle we are in at the moment. Each experience is a blessing, some are painful blessings and some are blissful blessings.

    Nature brings us into balance and harmony with the earth and its cycles…..Watching a seal, photographing flowers. Flowers are amazing!! An Eastern Master once said that “Flowers are the sole connection between Heaven and Earth.”

    Sometimes, if I find myself scattered, unable to focus because of mental or physical pain, I will purposely look for something beautiful to immerse myself in… A single flower in a vase, a you tube video of a rose unfolding or a time lapse movie of a caterpillar turning into a butterfly…..This is not to distract me from the pain but to immerse myself in the truth of my beingness. The truth that I am more than this physical body with all its aches and pains, that I am part of a Larger Universe.

    This does not mean that we don’t pursue whatever natural or medical treatments we feel need pursued….. but the goal is to be in oneness through the entire experience.

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    1. Thank you, Jill – “seeing the beauty in all things” seems so obviously a wise world view, yet how often do we (or I should speak for myself and say I) mouthe the words yet somehow miss the act, especially when feeling ill? The irony is that it’s when we most NEED that healing serenity that it’s hardest to stop focusing on the “awful” to truly appreciate that beauty…

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  14. You are such a breath of fresh air Carolyn. Your writing is so eloquent yet so authentic and timely. Keep up the great work. You are truly an amazing woman. I am uplifted reading your weekly blogs.

    I find them “breathtakingly beautiful” and a lovely part of my Sundays.

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    1. What a sweet note to start my Sunday, Kelly. Thanks so much for taking the time to write it!
      See you next Sunday… ♥

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